Kids with disabilities and birth defects are often victims of mistreatment and abuse. It's a heartbreaking fact, and one that Dr. Beth Van Horne, at the Children's Learning Institute at the University of Texas Health Science Center at Houston, and her team have been studying for years.
In the December issue of Pediatrics, Dr. Van Horne's team reported the findings of a recent study that shows children with certain disabilities are at greater risk for mistreatment than others. The study found that children with Down syndrome do not experience any more maltreatment than typical children, but those with cleft lip (with or without cleft palate) and spina bifida were 40 percent and 58 percent (respectively) more likely to be treated poorly than children born without birth defects. Also, the risk of medical neglect was 3 to 6 times higher for those with birth defects.
It's terrible to think that children who are already vulnerable are suffering abuse and maltreatment, but this sort of study shines light on a problem that's not talked about enough. It also serves as a call to action, reminding us, as noted in the American Academy of Pediatrics' press release: "Extra support programs are needed for parents of children born with disabilities, particularly medically complex conditions requiring intensive treatment and care during infancy."
I'm mom to a non-speaking autistic 7-year-old, and I believe this same sort of extra support is needed in the autism community. Too often news stories break about parents or caregivers who have harmed or even killed their children. The parents sometimes speak of how hard it was to care for their child, but the voice often left out of the equation is that of the autistic child or child with another disability. In an effort to change the conversation and save lives, the Autistic Self-Advocacy Network holds an annual "Day of Mourning," noting: "In the past five years, over seventy people with disabilities have been murdered by their parents. These acts are horrific enough on their own. But they exist in the context of a larger pattern. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the 'burden' of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victim is disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten."
We can do better. If someone you know needs support in caring for a child with a disability, reach out to them. Help them find support. Connect them with professionals in your community or available resources. A quick Internet search or call to a doctor can reveal many potentially life-saving resources.
Let's take better care of our most vulnerable kids and adults, and let's support their parents or caregivers before violence, maltreatment, and abuse occur.